Abigail's epilepsy story - Epilepsy Queensland - share your story

Abigail's Epilepsy Story

Abigail was diagnosed with multi-focal epilepsy at 20 months old. After significant challenges related to her condition, including many life-threatening episodes, Abigail, now 3 years old, is doing much better. This is due in part to a ketogenic diet and combination of medications. Her progress is also a testament to the unwavering love and care of her amazing parents, Danica and Jason. Read more about this young family's journey below.

A challenging diagnosis

Abigail had her first noticeable seizure at three days old. Abigail and her family are from a rural area (Ingham, North Queensland) and the equipment to facilitate a diagnosis isn’t available in their township. Subsequently, dedicated Mum Danica requested a referral to Brisbane Paediatric Neurologist Dr. Shah. After a particularly violent seizure, Abigail was officially diagnosed after a 24 hour EEG at 20 months old with multi-focal epilepsy.

Abigail has tried many medications, unfortunately none of which have impacted the severity or length of her seizures. Different side effects her family noticed included severe mood swings, rages, sleepiness, appetite changes, and cognitive dampening. As Abigail became older, the frequency of her seizures intensified.

Danica shares: “It was really difficult as a parent to watch your child’s personality change so severely. Currently, she is being treated with Clobazam and Fycompa and is on the ketogenic diet. Due to her ASD and sensory differences she is now tube fed on the diet and is awaiting her Gastronomy (G) Tube operation.” (where a tube is inserted through the belly that brings nutrition directly to the stomach.)

 

Tough times

When asked what a typical day is like for her family, Danica responds: 

“I don’t think we have such a thing as a normal day! Our days are so medicalised it’s crazy. There are generally different feed times and medication times both of which we try to make fun. Abigail loves her iPad which makes the difficult stuff during the day easier. Generally in the afternoons we enjoy some outside time on the swings and trampoline. Before gaining a degree of seizure control though, our days would consist of six or more seizures and at least an overnight stay in hospital for Status Epilepticus weekly.”

Danica recalls another especially tough time:

“We had a two week period last November where Abigail experienced over 120 clinical seizures- not counting her sub-clinical activity. I honestly thought at times during those two weeks we wouldn’t be going home and that was by far the toughest time in this journey.”

 

 

Additional challenges

As if this wasn’t enough, there are additional challenges Danica describes:

“We get a lot of judgement and opinions which is hard for both Abigail and the family as a unit.

Having spent so much time in hospital, Abigail has a limited friendship circle. We try to surround ourselves with people who understand our circumstances and are accepting of Abigail and her lifestyle.”

Danica and her husband Jason also require quite a bit of time off work over the year to allow for appointments or hospital stays which Danica says can make things really stressful.

A more positive direction

Abigail is now 3 years old and recently, Danica relays things have been headed in a more positive direction.

“We have been super lucky that Abigail’s childcare centre was able to apply for an aide for her to keep close watch and ensured all the employees completed epilepsy training. They also have completed theoretical and practical training on her keto diet and tube feeding.

“Abigail is doing really well on the ketogenic diet and we are hoping to wean off all her meds over the next six months. Since we have started weaning certain medications we have noticed Abigail’s memory and cognition improving which has been amazing.

My hope for Abigail is that she can live her best life and enjoy the small victories! My ultimate goal for her would be seizure freedom, but I guess we will see what the future has in store for us.”

 

Danica's message

The message Danica would like people to know is: “Knowledge is power! Educate yourselves on epilepsy before passing judgement and be mindful of people’s circumstances. I guarantee most people are going through something tough so spread love and kindness.”

Thank you Danica for sharing your epilepsy warrior’s story and helping to raise awareness of epilepsy. We are in awe of your strength and dedication and wish you and your family the very best in the future ?

 

If you’d like to share your story, you can send it to us or request the list of prompt questions by emailing pr@epilepsyqueensland.com.au.

Epilepsy Queensland